Side effects

[Chall]

hi there people. I'm new to the whole crohns thing. I've have had symptoms for the last 2yrs but only diagnosed October last year.

I am/was a keen cyclist and runner. I went to my gp as I was concerned about entering events with irregular toileting and that was pretty much all my symptoms at the time. After months of try this and try that I got tests done and diagnosed.

I know roughly what I can and can't eat but I'm still on the learning curve with diet and medication. My irregular toiling hasn't changed any either. But what's getting me most is the side effects from the meds

I have a pretty light strain of crohns to be fair and I'm on Azathioprine at the minute which is reduced to 25mg. This is not a lot of meds to take but I'm so struggling with tiredness and aches and pains, more so in my thighs. I can't even look at my running shoes or my bike and I get tired and sore.

Any tips to beat the tirdness?

 

[POTTYTIME!]

Would be a good idea to have blood work done to check for deficiency. Other than that, consider yourself blessed with the lack of meds you have to take. I myself take 14 pills a day and humira injections every 14 days, and I sleep 3 hours at best a day.

Hope all gets better soon.

 

[Chall]

Thanks for your reply. I get my bloods done every 2 weeks and there is only 1 reading that is high. My consultant said injections maybe the next step to target that one reading. I know I have it easy compared to a lot of other sufferers. I feel for them as this ain't good

 

[nitty]

Are you sure that the tiredness is due to the Aza? If your guts still aren't right then perhaps you are still not absorbing the essentials that you need. Your dose of Aza seems to be very low (I believe the usual dose is 2-2.5mg per kg of body weight)[I weigh 10stone/63kg and I take 125mg Aza per day], but I don't know if there is a clinical reason for the doctor prescribing it that way.

 

[Chall]

I came off pred and went into azathiropine as a at 50mg. 1 tablet per day. When I saw my consultant and told him about the side effects he reduced them to limit the side effects. I've not seen a dietitian to know what or what not to eat, I've just learned some things I need to swerve myself

 

[nitty]

I think reading around forums such as this one can be as helpful as seeing a dietician. You can get ideas about the sorts of food that some people find problematic, but there is no one rule for IBD - everyone is different. My consultant wouldn't even discuss diet with me as it is impossible to advise on such an individual basis. Personally, I can eat pretty much everything in moderation without any effect, but others can be very sensitive to certain foods.

The medication may also just have to be a case of trial and error. As well as the Aza I was also taking Mezavant. I stopped the Mezavant in September as I was fed up with feeling 'old before my time' and everything was such an effort and also caused lots of acheyness(?). I definitely felt better off it, but 6 months later some of my symptoms have crept back and I will have to re-think my options.

It sounds like your consultant is at least listening to you and that is half the battle. There are no quick fixes unfortunately, but if you can have good communication with your health team then you'll get there eventually.

Do you also have contact with a specialist IBD nurse who you can get in touch with in between appointments? A good one of those can be like a guardian angel sometimes!

 

[Chall]

Thanks for the reply. I don't have ibd nurse. Just my consultant and doctor. That's me finished giving bloods every 2 weeks now as they have stablised. Wish my tiredness and achyness would stabilise too. Haha. Like you say it all takes time and I should be thankful I've not got a bad strain of crohns.

 

[David]

Greetings and welcome to the community

Out of curiosity, is you avatar upside down on purpose or would you like me to fix it for you?